Thursday, January 29, 2009

Confusion

Thank you for the wonderful comments and emails ...yesterday was not a good day. In all honesty, I don't have an actual memory of writing that post or hitting publish. I'm sure it was during the point in time during the day that I was hysterical. I'm still worried today - but much more rational. They called me at work to give me the results. The girls pulled me out of a room during a patient visit ..I picked up the phone thinking it was a doc that I had put a call in to...and heard this, "Hi Shauna this is Nurse Blah blah with OB/friend? Hon ..your quad screen is positive for Downs so we're cancelling your ultrasound here and sending you over to the perinatologist for a level II ultrasound and amnio." I honestly don't remember anything in the conversation after that. Sometimes ...I think life provides us these lessons for a reason. I am frequently in the position to tell people awful things about their health or the health of a loved one. Daily. And while I have always considered myself to be extremely sensitive about the whole process and always schedule a follow-up 2 or 3 days later because I know they aren't going to process much after, "You have MS." or "You have brain cancer." or "Your wife has Alzheimer's disease." - I've never experienced the complete shut down that I did after that phone call. I actually had to call them back to get the details again. Like..Umm....do I make the appointment with the specialist or were they going to? (they did). What is the actual risk ratio of the labs? (1:480, age adjusted to 1:148). What did they report as my due date on the requisition form? (A day 9 days prior to what I know my due date to be ...because ..please. I charted the day, time, and minute the OPK was positive and POAS obsessively 5 times a day until it turned positive). How much will a week or so difference in due date change the results? (a lot).I really, really didn't want to have this test done. I don't believe in it because of this exact crap. It has a notoriously high false positive rate - but even then - it isn't a diagnostic test. It's a screen that gives you a relative risk. In my case? It increased the risk of this baby having Downs from 0.1% to 0.6%. Either way, there is still greater than a 99% chance that the baby does NOT have Downs syndrome. No matter how much additional testing tells us that the baby is fine - I will not feel comfortable until I actually deliver and there are no tell tale signs. I let the OB convince me because if the result is ..like...spina bifida ..they can do in utero surgery which can drastically alter the quality of the baby's life. I would never have the test done again in the future though.So ..while the logical part of my brain is okay and figures..hey ..we get an awesome ultrasound out of the deal ...the emotional part of my brain is still mostly devastated. First because ...that would be incredibly sad. For our lives ...for the baby ...for the golden child ...it would change things in ways that I don't want to be changed. Secondly? I hate that I couldn't handle the phone call yesterday. I used to find myself to be incredibly strong and able to deal with just about anything. Over the past few years I've somehow turned into someone that can be knocked over by a leaf. I'm not sure when or why that happened. And third? I am very, very not proud of my immediate reaction. It was not a "I don't want to deal with this" type of reaction. It was a "I can't deal with it" reaction and I hate that. My mom has a brother that is severely, severely disabled with cerebral palsy and I have seen both her and my grandma dedicate the majority of their lives to his care. My grandma is 87 years old and still transfers him from his wheelchair to the toilet and back to bed. 87. It was honestly one of the first images that came to me when they told me the screen was positive. They always say that we see people's truest colors in moments of crisis. I don't like what I saw in myself yesterday.

11 comments:

Debbie
said...

I just wanted to send you some hugs and support. I'd initally opted against the screen but then had it done after my 20-week u/s showed a possible Down's marker. My screen also came back positive and we ended up at the peri for another u/s and ultimately an amnio. Everything was FINE with my little boy but I missed several weeks of happy pregnancy time as a result of the worry. If we ever have another, I don't plan to do that test again. Everything I read when I was going through it, was all about the false positives.

I'm kind of pissed, reading what you wrote, that the nurse (incorrectly) told you over the phone that your baby was "positive" for Downs. From your explanation, nothing could be further from the truth: slightly more likely does not a positive make, methinks.

Still, your anxiety is so understandable. Another reason I'm mad at Nurse Blahblah. I hope the u/s is helpful.

I came from the Lost and Found, and just wanted to encourage you to be very gentle with yourself. Getting a phone call like the one you got yesterday is definitely not a "leaf" to get knocked over by - news like that, even when it's a relative risk and you can use your rational mind to understand that things are still very likely fine and the test is flawed and all of that, news like that is a hurricane in your life. So you are stronger than you think if it takes something like this to knock you down for a while.

I'll keep you in my thoughts and prayers and wish you and your baby good health and good news to come at the next u/s and beyond.

dude...you responded the way that anyone would. you get through it. your immediate reaction doesn't put your character into question. it's a stressful bit of info that you are allowed to process in any way that works.

I echo Anna's sentiments to be gentle with yourself. Yesterday was not a true crisis. The crises that test our mettle require us to act. Yesterday was about learning upsetting information, not springing into action. I am sure that if you had to take action to help your child (perhaps lifting a car off her leg or diving into the ocean) you would rise to the occasion.

I'm sorry about the news you received and the manner in which it was delivered. It just seems that telling someone their screen was positive for downs when it was a screen that can't conclusively tell if in fact Downs is present isn't the best manner to deliver the news. Hugs to you and I hope the level II ultrasound is clear and helps to relieve your fears.

The mind just starts swimming in some kind of vaccuum...gravity will eventually reclaim it, but its a hazy journey till that point. I am hoping that this is a false positive. But I am hoping more for you to be able to muster your strength and continue to be brave. After all, isn't this what life is about?

I wanted to send you a comment yesterday but didn't get a chance, but I think you are being too hard on yourself, and your reacted completely appropriately. We all have our vulnerable spots and "my child may not have all the opportunities I had dreamed that they would" is certainly a sensitive spot and does not negatively reflect on our character... It's not like we're suppose to be glad something scary is happening. ((Hugs))